Published byStanford Medicine

LGBT

Last spring, I traveled to Washington, D.C. for my first experience as a citizen-activist, lobbying in Congress for the rights and well-being of women and LGBT individuals in the developing world. I recently returned there to see some of the impact of that work – crucial new appointees, new legislators in support of key issues and new words of encouragement from both sides of the political aisle.

I visited Washington as part of a 170-person delegation from the American Jewish World Service (AJWS), an international organization that promotes human rights and seeks to end poverty in developing countries. Our goal was to advance several initiatives, including passage of the International Violence Against Women Act, and changes to ensure that U.S. foreign contracts and foreign aid programs do not discriminate against LGBT individuals.

I was thrilled to hear a talk by Randy Berry, the State Department’s first-ever Special Envoy for the Human Rights of LGBT Persons, who assumed the new post in February. Just a year ago, AJWS had made the appointment of a special envoy one of its priority issues, and many of us, myself included, had met with our Congressional representatives to push for the position. I had been motivated by my experiences as an AJWS Global Justice Fellow in Uganda in 2014, when we met with LGBT activists who were living in a climate of terror because of the country’s impending anti-gay law. We heard stories of people who had been raped, beaten, harassed, evicted from homes and jobs and subjected to summary arrest.

I realized it was important to make LGBT rights a priority issue for U.S. foreign policy. Berry, the new U.S. envoy, said AJWS had been a “prime mover” in the creation of his new office – gratifying news indeed. He said he views LGBT rights as a “core human rights issue.”

“We are talking about equality, and it should go hand-in-hand with what we are doing in gender equality and in the disabled community,” he told us. “One of the most disturbing elements of discrimination is that it’s the first step to denying one’s humanity.”

He acknowledged that he has a daunting job ahead; while the U.S. is making swift progress on gay rights, these rights are just as swiftly being eroded in other parts of the world. Nearly 80 countries now criminalize same-sex behavior, with penalties that include death or life in prison. Yet the fact that the U.S. has made so much progress in recent decades suggests it’s possible to change the climate elsewhere as well, he said.

“Who would have dreamed 20 years ago that we would be where we are today in the United States,” he said. “I am sitting here today with the support of the State Department, the president and members on both sides of the aisle.”

We also saw progress on the International Violence Against Women Act, which would make ending violence against women worldwide a top U.S. diplomatic and development priority. Violence against women and girls is alarmingly pervasive, with as many as one in three being beaten, coerced into sex or subjected to other abuse in her lifetime.

The legislation was reintroduced in the House of Representatives in March with a record 18 co-sponsors, including many more Republicans than in the past. On the morning of our lobbying visits, we heard from seven Members of Congress, including Chris Gibson (R-NY), Richard Hanna (R-NY) and Lee Zeldin (R-NY), all of whom expressed strong support for the bill. David Cicilline (D-RI) described a trip to Liberia in which he met a group of young girls who had been subjected to “hideous, indescribable sexual violence.”

“It made me realize we need to do everything we can to change the lives of these young girls,” he told us.

For great patient care, a doctor needs to understand the patient’s life and the patient needs to feel comfortable sharing. This can be especially challenging when it comes to the LGBT community, which was part of the impetus for a talk on the Stanford Medicine campus last week. The event focused on challenges faced by sexual and gender minorities (SGM) in medicine, not just as patients, but as physicians and medical students as well.

Matthew Mansh, a fourth-year Stanford medical student; Gabriel Garcia, PhD, professor of medicine and associate dean of medical school admissions at Stanford; and Mitchell Lunn, a research fellow at UCSF and a graduate of Stanford’s medical school, are all part of Stanford’s LGBT Medical Education Research Group. After hearing the three speak, I walked away with a greater understanding of how important and challenging it is for doctors to have intimate conversations with their patients.

Of the three, Lunn’s talk was the most oriented towards helping practitioners be more sensitive about He began by laying out some terminology (terms are moving away from assuming two genders – bisexual is falling out of favor, for example), but emphasized that even the most sophisticated labeling won’t tell you which organs patients have or which sex acts they’re doing. Providers have to ask and be comfortable with the terms they should use to ask, Lunn said.

Coming from an anthropology background, I know how hard it can be to not make assumptions. But Lunn emphasized that it’s crucial for clinicians to try: Patients overwhelmingly answer when asked about things in their lives, and they subsequently receive better care, such as screenings for HIV and hepatitis. Among the barriers to providers asking about sex and gender practice/expression are fears of being intrusive, cultural differences, ignorance regarding the clinical relevance of such questions, patient’s lack of genital complaints, and uncertainty of how to ask. Most of these can be combated with provider education; as for how to ask, Lunn says it doesn’t matter as long as the doctor’s questioning makes no assumptions and is the same for everyone.

Intake forms could ask preferred pronouns, for example. Stigmatizing language like “atypical practices” and questions like “Are you married?” should be avoided. Questions about sex and gender practices can be grouped with those about drug use, wearing a seat belt, and going to the dentist – the goal is to normalize these conversations; people don’t want to be targeted or singled out. In every intake visit, Lunn says to his patient: “I talk to my patients about gender identity – do you know what I mean by that?” Crack the door like this and most who are gender nonconforming will go through it, he assures.

As a scholar with ties in both humanities and medicine, I’m always interested when those realms intersect. Medical understanding of sexuality has been heavily influenced by social science and humanities research, and now a new frontier in sexuality studies, asexuality, is being pioneered at Stanford.

Karli Cerankowski, PhD, who graduated from Stanford’s Program in Modern Thought and Literature last year and is a lecturer in Stanford’s Program in Writing and Rhetoric, is working on broadening our perception of healthy sexuality by including lower levels of sexual or romantic desire. Her work, recently spotlighted by Stanford News, traces people who might now identify as asexual through historical and pop cultural works, analyzing how they and society have interacted. She’s quoted in the Stanford News piece as saying that “society has normalized certain levels of sexual desire while pathologizing others. In a sense, it’s the social model that’s broken, not asexuals.”

Asexuality is a very new field of study, which exists under the wide umbrella of sexuality and gender studies. Cerankowski and her co-editor, Megan Milks, recently published the second book ever to be written on the topic. Thinking about the ways people experience their sexuality, desire, and gender informs how science and medicine understand optimal human health. Although sex and sexuality occupy a prominent place in our culture’s understanding of bodies, they are not prominent for every individual.

Cerankowski, again quoted in Stanford News, says:

If we recognize the diversity of human sexuality, then we can understand that there are some people who just don’t experience sexual attraction or have a lower sex drive or have less sex, and that doesn’t mean there is something wrong with them… We sort of prioritize sexual pleasure and sexual fulfillment in our lives, but we can think about the other ways that people experience intense pleasure, like when listening to music.

Pleasure and desire are important aspects of being human, but they don’t have to be tied to sex, or even to romance. On the wide spectrum of asexuality, there is room for those who engage neither in sex nor romance, as well as those who enjoy a romantic partnership and may engage in sex for reasons other than personal desire. This spectrum intersects with other aspects of sexuality that have also, though activism, become recognized as spectrums: sexual orientation, sexual identification, and gender identification.

Imagine being a forty-six-year-old woman pregnant with her third child, whose amniocentesis follow-up shows that half her cells carry male chromosomes. Or a seventy-year-old father of three who learns during a hernia repair that he has a uterus. A recent news feature in Nature mentioned these cases as it elaborated on the spectrum of sex biology. People can be sexed in a non-straightforward way and not even be aware of it; in fact, most probably aren’t. As many as 1 person in 100 has some form of “DSD,” a difference/disorder of sex development.

The simple scenario many of us learned in school is that two X chromosomes make someone female, and an X and a Y chromosome make someone male. These are simplistic ways of thinking about what is scientifically very complex. Anatomy, hormones, cells, and chromosomes (not to mention personal identity convictions) are actually not usually aligned with one binary classification.

The Nature feature collects research that has changed the way biologists understand sex. New technologies in DNA sequencing and cell biology are revealing that chromosomal sex is a process, not an assignation.

As quoted in the article, Eric Vilain, MD, PhD, director of the Center for Gender-Based Biology at UCLA, explains that sex determination is a contest between two opposing networks of gene activity. Changes in the activity or amounts of molecules in the networks can sway the embryo towards or away from the sex seemingly spelled out by the chromosomes. “It has been, in a sense, a philosophical change in our way of looking at sex; that it’s a balance.”

What’s more, studies in mice are showing that the balance of sex manifestation can be shifted even after birth; in fact, it is something actively maintained during the mouse’s whole life.

According to the Nature feature, true intersex disorders, such as those from divergent genes or the inability of cellular receptors to respond to hormones, yield conflicting chromosomal and anatomical sex. But these are rare, about 1 in 4,500. For the 1/100 figure, they used a more inclusive definition of DSDs. More than 25 genes that affect sex development have now been identified, and they have a wide range of variations that affect people in subtle ways. Many differences aren’t even noticed until incidental medical encounters, such as in the opening scenarios (the first was probably caused by twin embryos fusing in the woman’s mother’s womb; the second by a hormonal disorder).

Fears of discrimination from faculty, peers and patients continue to pressure many in the lesbian, gay, bisexual and transgender community to stay “in the closet” while in medical school, according to a Stanford study published today in Academic Medicine.

Some medical students worry that “coming out” could affect their grades; others are influenced by homophobic or sexist remarks overheard from peers and faculty to keep their sexual or gender identity hidden, according to the results of an online survey sent by the study’s authors to medical students throughout the U.S. and Canada. One respondent recounted an appointment during a surgery rotation with a transgender patient who was “treated like a freak by the residents and attendings behind closed doors, joking at his expense.”

The study, authored by members of the Stanford Lesbian, Gay, Bisexual & Transgender Medical Education Research Group, was accompanied by a commentary that maintains the medical community is less accepting of sexual and gender minorities than the business or law communities. From a press release I wrote on the study:

“There is still this huge percentage of medical students who are afraid of discrimination in medical school and how it could affect the rest of their careers,” said Mitchell Lunn, MD, a co-author of both papers and co-founder of Stanford’s LGBT research group. “We are supposed to be a field that is accepting of people and one that takes care of people regardless of differences, and yet we can’t even do that for people who are part of our own community.”

The study found that a third of sexual minority medical students choose to remain “in the closet” during medical school, 40 percent of medical students who identify as “not heterosexual” are afraid of discrimination in medical school, and two-thirds of gender minority medical students (those identifying as something other than male or female) conceal their gender identity during medical school.

During the 1990s and early 2000s, HIV/AIDS pummeled through southern Africa killing thousands. Although the epidemic has abated somewhat, the disease is still spreading through certain communities, including the lesbian, gay, bisexual, transgender and intersex (LGBTI) population.

In Zimbabwe, where homosexuality is illegal and President Robert Mugabe has actively spoken out against the LGBTI community, health-care provider Caroline Maposphere works behind the scenes, trying to change the prevailing attitudes and laws without sparking a homophobic backlash like that in Uganda. Maposphere, who serves as a nurse, midwife, chaplain and gender advocate, will visit the Stanford campus this evening to discuss her efforts.

“She tells great stories about how you deal with the kind of social and community issues that lie around HIV prevention and gay and lesbian health issues in a very homophobic and resource-poor environment,” said David Katzenstein, MD, a Stanford infectious disease specialist who met Maposphere in 1992 while working on the Zimbabwe AIDS Prevention Project.

Preventing the spread of HIV in Zimbabwe isn’t as simple as handing out condoms or launching an education campaign, although those are key strategies, said Maposphere. The nation is poor, has few health-care facilities of any kind and LGBTI rights are non-existent. The traditional southern Africa culture view of homosexually, which was sometimes attributed to witchcraft, further complicates the issue.

“It’s very difficult to reach out with services to groups that are not coming out in the open,” Maposphere said. “We try to reach out and remove some of the barriers through discussion rather than being outright confrontational.”

Maposphere often encounters LGBTI individuals who feel they have been shunned by God and have been excluded from their churches in the predominantly Christian nation. In an effort to offer spiritual guidance as well as health care, she earned a college degree in theology and hopes to explore the religious aspects of her work while at Stanford.

In addition, Maposphere is planning to connect with gay-rights activists here and learn effective methods for countering homophobia in her native country. “I’m very hopeful that things will change,” she said.

The free discussion begins at 7:30 PM in the Vaden Education Center on the second floor of the health center on campus.

When Stanford anesthesiologist Audrey Shafer, MD, welcomed attendees to a screening of “The Camouflage Closet” on campus recently, she noted the artistic accomplishments and service work of the film’s director, Michael Nedelman. (And also mentioned he was “a Stanford medical student in his spare time.”) Nedelman, who will be entering his third year here, conducted a project with nine LGBT veterans, all patients at the Veterans Affairs Palo Alto Health Care System, exploring their experiences of trauma and recovery.

Nedelman and his collaborators engaged in a community-based participatory method of film-making, allowing participants to tell their stories through art as a path toward empowerment. The participants were provided with cameras to document their stories; they also had a say in the editing process. And while the project was neither officially sanctioned research nor therapy, many of the participants found the process therapeutic. Christine Stout-Holmes said this in the film about sharing her story:

It’s healing. It makes me feel like, “Hey, I don’t have to be agoraphobic.” “Hey, I don’t have to isolate.”

…

Of course, I feel fists beating me on my back, but I know that that’s not now. And I know that what I’m doing now is going to benefit clinicians, and vets, and hopefully artists, and young girls to know that every story is important.

You have a BA in film studies from Yale. How did you decide to attend med school, and have your interests in art and medicine always intersected?

It took me a while to understand exactly how my interests in art and medicine intersected, but it turned out they had a common ancestor in my love of story.

A few years out of college, I was working at Mount Sinai in New York City on both clinical research and documentary film studies. Whether or not there was a camera in the room, I loved hearing people’s stories, and turning those stories into something meaningful. But in a medical context, I also saw the opportunity to get involved in these stories – to reach past the lens and make a tangible difference.

Combining the two wasn’t really a new concept, though. My first major work in college was a photography project addressing preventable blindness in South India. As with “The Camouflage Closet,” I loaned out cameras to rural vision clinic patients who were able to document their restored sight through images that were important to them. But I had no idea that hyphenating doctor-filmmaker was even an option until I discovered, and later met with, filmmakers like Maren Grainger-Monsen, MD, and Gretchen Berland, MD. Something clicked when I figured out that patient care and digital media could go hand-in-hand.

What are some of the issues faced by this population that you’re most interested in exploring through storytelling?

Some of the issues I found most compelling are not just the unique challenges faced by some individuals (e.g. witch hunts of the pre-DADT – “Don’t Ask, Don’t Tell” – era, increased rates of military sexual trauma, barriers to accessing care), but also the creativity and strength that come from their recovery narratives. Alongside some of the heavier moments in the film, there’s some humor, too. I think I personally learned a lot from the veterans’ resilience, and how their pride – for being LGBT, and for being veterans – factors into their personal growth.

What do you hope viewers will take away from your film?

I hope viewers will come out of the film with a desire to learn more about the unique challenges, types of trauma, and sources of resilience among a previously silenced community. I think there’s a lot to identify with in the film, whether or not you identify as LGBT or a veteran, and there’s a lot to be said for turning empathy into action. This is partly why we also created an accompanying educational resource that summarizes previous research, evidence-based suggestions for culturally relevant care, and resources for clinicians and veterans.

The veterans were excited that clinicians and providers would see and learn from their work. But at the end of the day, I wonder if some of them might have answered this question a little differently. Something we often heard among the vets was, “Even if just one other veteran out there sees this and knows they aren’t alone, we’ve accomplished what we came here to do.”

Lesbian, gay, bisexual and transgender patients often face a unique set of health risks, including higher rates of hepatitis among gay men and increased risk factors for breast cancer among lesbians. Past research conducted at Stanford highlighted the need to better train future physicians on how to care for the LGBT community. Now findings published in the American Journal of Public Health show national funding for LGBT medical research is also lacking, which is contributing to health inequities for patients.

During the study (subscription required), researchers examined studies funded by the the National Institutes of Health between 1989 and 201 and found 628 pertained to LGBT health issues, which accounts for one-half of one percent of all studies supported by the institute. A significant portion of these studies focused on sexual health matters, including HIV/AIDS, and the majority related to health of sexual minority men. Studies unrelated to sexual health matters accounted for one tenth of one percent of all studies during this time period.

In a release, study authors made the following recommendations to boost funding for LGBT studies and reduce inequalities in care:

Establish policies that designate LGBT people as priority populations for research that goes beyond HIV/AIDS and sexual health issues.

Explore new strategies to increase the amount of LGBT health research, including support for diversity among researchers.

Support efforts to expand the pool of trained researchers prepared to propose LGBT research projects through training grants, fellowships, career awards and the establishment of LGBT Centers of Excellence.

Past reports have found high levels of postponing medical care in transgender and non-gender-conforming people, owing to experiences including refusal of care, harassment and violence in medical settings, and lack of provider knowledge. A 2011 committee opinion from the American Colleges of Obstetricians and Gynecologists called the consequences of inadequate treatment among this population “staggering.”

Now, Canadian research on an Ontario transgender population shows levels of emergency-room avoidance by trans people. Published online in the Annals of Emergency Medicine, the study (subscription required) examined data from surveys in 408 transgender, transsexual, or transitioned people, many of them young (16-24 years); approximately half were male-to-female and half were female-to-male.

“Patients who have had trans-specific negative experiences in other parts of the health care system may defer care until they are desperate and need the ER,” said lead study author Greta Bauer, PhD, MPH, of the Schulich School of Medicine & Dentistry in London, Ontario, Canada. “The good news is that nearly three-quarters of those who needed emergency care were able to get it in the ER. The bad news is that so many still were not.”

Almost one-quarter (21 percent) of trans patients reported ever avoiding the ER due to a perception that their trans status would negatively affect such an encounter. Negative experiences specifically related to being transgender were reported by 52 percent of trans patients.

Approximately 54 percent of trans patients reported having to educate their providers “some” or “a lot” regarding trans issues.

Bauer and her colleagues noted in the paper that their work “represents a first contribution on trans experiences within emergency medicine.” More research is needed, they said, “to better understand reasons for ED avoidance and to develop strategies to overcome this.”

“The Camouflage Closet,” a short documentary directed by Stanford medical student Michael Nedelman, offers a snapshot into the lives of nine lesbian, gay, bisexual and transgender (LGBT) veterans and their personal stories involving post-traumatic stress disorder (PTSD), trauma and recovery. The documentary will premiere tomorrow night in San Francisco as part of the National Queer Arts Festival.

Discussing the importance of making the film, Nedelman said, “Many of us rely on two things to cope with traumatic experiences: community and identity. In the military, this was actively suppressed for LGBT service members. Even though [Don’t Ask, Don’t Tell] DADT has ended, we will continue to see the impacts of anti-LGBT policies, and it is becoming clear that there is much that can be done to address it.”

In the brief Q&A below, he talks about the motivation behind the project and what impact he hopes the film will have on the public:

What was the catalyst for creating the film?

The film came about fortuitously, like it was waiting to be shot. There were many things that led us to create the film: I bumped into Andrew V. Ly, now the film’s composer, on my first day as a Californian. We became fast friends, exchanged clips of our own work, and attended an arts workshop together called “Creating Queer Communities,” where we began putting together a proposal for a project that would combine our interests in art and advocacy, as well as my interests in health and medicine. We thought about the LGBT veteran community as something we were very interested in, but there was so little information out there—only 18 empirical studies had ever been published in peer-reviewed journals.

Meanwhile, little did we know that Heliana Ramirez, LISW, was facilitating one of only 15 known LGBT groups at VA hospitals in the country—right here in Menlo Park! Moreover, she had done digital storytelling projects in the past, so I’d say our interests were uncommonly well aligned. Finding the right collaborators, having such a supportive VA, and meeting a group of nine inspiring, artistic LGBT veterans signaled to me that this project was a special one—a unique opportunity that, at least for now, would be difficult to produce anywhere else.

What impact do you hope the film will have on audiences? For example, is the goal to raise awareness, amplify the voice of an underrepresented group, etc?

We think this project has many important audiences, including other people in the LGBT, veteran, and medical communities. We really hope it will foster discussion about opportunities for research, growth, and advocacy in addressing LGBT veteran health issues. This summer, Heliana and I will be working on a teaching guide to accompany clips from the film.

But first and foremost, we used a “video voice” model—which puts cameras into people’s hands—as an empowering tool for participants to share their stories in a structured group setting. At the heart of the methods we used to create this film are the goals of positive change for marginalized communities, and understanding the challenges and strengths of these communities.